{"id":6032,"date":"2018-05-10T15:27:24","date_gmt":"2018-05-10T19:27:24","guid":{"rendered":"http:\/\/dsavannah.com\/blog\/?p=6032"},"modified":"2021-05-05T23:16:53","modified_gmt":"2021-05-06T03:16:53","slug":"an-mecfs-crash","status":"publish","type":"post","link":"https:\/\/dsavannah.com\/blog\/index.php\/an-mecfs-crash\/","title":{"rendered":"#MEAwareness: What a Crash looks like"},"content":{"rendered":"

\"millionsmissing\" On November 30, 2017, my husband took me to a Continuing Education event, hosted by the CDC and #MEAction,<\/a> to view the documentary Unrest<\/em><\/a>, an unflinching, real, true, up-close-and-personal look at chronic illness, specifically myalgic encephalomyelitis<\/strong><\/a>, commonly (and erroneously) (and horribly) known as chronic fatigue syndrome (MEcfs). A disease I suffer daily.<\/p>\n

The filmmaker, Jennifer Brea<\/a>, was in attendance (who I was too exhausted to meet), as were members of the Georgia Chapter of MEAction<\/a> (on Facebook, so you’ll need an account), along with Dr. Elizabeth Unger and Dr. Nancy Klimas (sorry I’m too tired to get links, but they are Very Important People and Advocates for MEcfs).<\/p>\n

Although I wrote copious notes from the event to write a blog post, I have been unable to do so, nor have I been able to re-watch the film. (I get about 10 seconds in and start crying.)<\/p>\n

On the way home, at 9:38pm, I filmed a short (1:03) video of myself (transcript below), which I have only shared with other ME patients. But now, in light of #MEAwareness, it feels like I should share it widely.<\/p>\n

Note: the sound quality is poor, as the background noises from the car driving are louder than me speaking, slowly and in a low monotone. You may also have to unmute the video.<\/p>\n

You can see the video on my Facebook page<\/a>. Embedding it does not seem to be working any longer.<\/p>\n

Image description: <\/strong>a very tired face laying on pillows in the back of a car and speaking to the camera; the streetlights move on and off the face, making it somewhat moody; is also a good allegory for how #pwME can be fine one hour, and not at all fine the next.<\/p>\n

I say:<\/strong><\/p>\n

\u201cHi. I\u2019m dSavannah.<\/p>\n

\u201cAnd the reason you can\u2019t see me is I\u2019m in the backseat of the car on the way home from a continuing education event and screening of the documentary Unrest<\/em> about MEcfs.<\/p>\n

\u201cAnd it exhausted me so much that I was sobbing on the way out of the theater.<\/p>\n

\u201cAnd now I\u2019m having to lay in the back seat to get home as my husband drives.<\/p>\n

\u201cAnd I want to cry but I am too wrung out and I\u2019m going to be in bed for probably the next two days from just this little tiny effort.<\/p>\n

\u201cAnd this is what MEcfs looks like.\u201d<\/p>\n

 <\/p>\n

dSavannah note<\/b><\/span>: in fact, my pain flare and Post Extertional Malaise flare lasted over a week, and got ten times worse than what I felt that night.<\/p>\n

I wrote the following notes in my calendar:<\/p>\n